Fun in the Florida Sun!

We spent some time in Florida vacationing and visiting with Charlie's Uncle Dave, Aunt Colleen, Aunt Sheri, and Uncle Trevor earlier this month! Charlie's first vacation, first time on a plane, first time out of state, first time in the ocean... Lots of firsts and a lot of fun!

After flying into Orlando, we set out on our own for a few days. First stop was the Lowry Park Zoo in Tampa. It was HOT (like shoes sticking to the pavement kind of hot), but we had a really good time and Charlie was really into the whole experience.

Looking at the rhinos rolling in the mud

They became Charlie's favorite animal. We bought him a

little stuffed rhino that he is quite attached to now!

Ahhh... We found some AC and popsicles for a little break from the heat!

Charlie trying to keep cool in his stroller

After our quick stop in Tampa, we drove on to Clearwater where we stayed at one of the resorts on the beach. Its a beautiful area with incredibly nice people. We tried to stay out of the sun during peak hours - our goal for the week was no sunburns - but we still managed to enjoy the resort with the sand, ocean, and pool.

Charlie dipping his toes in the ocean for the first time

Breakfast of Champions

Cool Dude in the hotel kiddie pool :-)

He enjoyed the water immensely and was even

ok with splashing and craziness from a group

of older kids who invaded the kiddie pool.

After our fun in the sun on the Gulf Coast, we headed back to the East Coast for some quality time with the D'Angelos in Port Orange (near Daytona Beach). Charlie really loved getting to spend time with his Aunts and Uncles and we enjoyed our time with them as well!

Captain Awesome hitting up Daytona Beach with everyone

Cuddling with Aunt Sheri after our day on the beach

"Every house has new toys for me!!

We should come here more often!"

Having a cold one in the pool with Uncle Dave

Charlie's first icecream cone!

Mr Independent decides he doesn't need any help with his icecream!

We had a lot of fun and it was a really special time for us - - something we have been looking forward to for awhile. We love to share our Miracle Man with the world and it never ceases to amaze us that he makes friends everywhere he goes! During our time in the airport before each flight, he managed to convince someone else to love him with his antics! And in all, he handled the flights themselves very well. He was antsy on the way down and we used every trick in the bag to keep him in our laps, but he slept most of the way home. Both flights he cried and pulled at his ears for the last 20 minutes or so. We had bought earplugs, but he wouldn't leave them in. He was wonderful all week long considering he had no routine at all and was in a new place every couple of days. He is an amazing little boy and we are just more and more in love with him every day!

Our Little Big Boy

We brought Charlie to the barber shop last night for his first real haircut (not counting the Dr Marr specialty when his head had to be shaved in the NICU)! He was such a good boy and looks like such a little man now! He was all smiles when he got done and earned himself not one, but TWO lollipops from the barber! Daddy was far more traumatized and said that watching Charlie get stuck with needles is far easier than watching him have his haircut!

In other news, there is not much news! So far, so good with the dairy introductions. We are still just sticking with the yogurt and cheese, but he seems to be handling it. He has a little rash on his chest that we are keeping an eye on, but we are thinking it is due to sunscreen and heat. He is such a sensitive little man!

His eating has improved in the past couple weeks (of course admitting this out loud is sure to curse us again!). He still prefers crunchy things over anything else, but he is eating sandwiches and his cereal and yogurt again with less of a fight. We have found that giving him his own spoon and letting him help makes for an easier meal with less aggravation and more actual ingestion of food! Of course this does backfire when he throws a spoon full of yogurt at your head as he did to me this morning!

Tantrums are his newest form of communication. He goes all out - screaming and throwing himself on the floor. I am curious to know where he learned this from as we are both fairly even keeled people. And we thought this was not supposed to be an issue until the "terrible two's". Yet another urban legend of parenting!

Charlie did just get over a little cold - coughing and lots of snot. He handled it well besides not sleeping quite as soundly. He is down to one nap a day (by his choosing, not ours!) He is getting really good at copying what people say. He loves teddy bears and has a few favorites in particular. By far his favorite word and object though is "basketball". Every ball tends to be called basketball now, but he definitely understands the concept and tries to dribble. Deacon Nick, who is also the basketball coach Vince works with, says that he will be able to dribble with both hands before he can write his name! We'll see about that!

I have to say that things in our world are good! We are looking forward to some special family time in the coming weeks and a summer full of fun adventures!

waiting for our turn at the barber shop

This was what Charlie picked up and decided to read while waiting!

:-)

not quite sure if he likes this

such a good boy!!

big smiles when he was all done!!

Memorial Day BBQ at Aunt Dee's house

the boys all sharing strawberry shortcake

mmm...

Does this picture even need a caption??

all smiles playing outside!

another unsolved Charlie mystery

So, the pediatrician's office called yesterday afternoon with Charlie's allergy test results and surprisingly everything came back negative! While this is obviously good, exciting news, it does make you wonder what are the chances of breaking out in hives when milk was introduced without having an allergy. Hmmm... Just one more unsolved Charlie mystery!

So the plan now is to reintroduce all the dairy foods we were already giving him before he had the reaction (yogurt and cheese). Once he shows he can tolerate those still, then we will SLOWLY begin to introduce whole milk again and keep our fingers crossed. If he happens to react again, then we will probably have to bring him to an allergist to get a specialist's opinion on the matter.

We are going to remain status quo for the weekend and switch it up next week. I will keep you posted, but am hoping for no exciting news to share! :-)

Milestones and 15 months

I am a little late on updating, but on April 30th we "celebrated" our last one year NICU milestone - - One year since we were discharged and our family came home! It was probably one of the scariest days of the entire experience - and one of the most emotionally trying. It was and is hard to explain to people why we were not absolutely ecstatic that this day had come. Yes, we were obviously happy, but right along with that we were bombarded with feelings of fear and sadness that we were not completely prepared for.

Every new parent feels some sense of fear at taking their baby home for the first time, but what I felt was not that typical emotion. I still felt as if there were so many unanswered questions: Why had he vomited for so long even when nothing was being put in his stomach? What was the source of the old blood that he puked up for days? Why had he stopped breathing in front of me just over a month before being discharged? The doctors had run numerous tests, but found no answers to most of their questions and I was very uneasy with the lack of definitive conclusions. But I had to trust that the doctors were right in saying he was ready to move on at home. The only thing that put me at ease was that Dee was adamant that he was ready.

And, as I said, there was definitely a sense of sadness when we left the hospital that day. We had come to find the NICU home and the people there were our friends. Even though we had the best possible outcome in leaving the hospital with our baby, we were sad to leave our hospital home and friends behind. It was very strange to move from living and breathing for daily visits with our son to suddenly having him home.

But like everything, we adjusted and as the days and weeks passed, we could not imagine life any other way. To think that it has been a full year since we heard those beeping monitors and smelled the distinctive antiseptic NICU scent seems crazy! We think about those 85 days often and cannot begin to understand the full depth of the impact that time had on us.

Charlie is now 15 months old and is such a big boy! He literally learns something new every day. He has started copying words we say (gotta be careful now!). He says "bless you" after he sneezes and "thank you" when he hands something to you. He loves to read his books and will just sit and flip through them "reading" them out loud. Hos favorites are definitely the Five Little Ducklings, three of his Sandra Boyton books (Doggies, ABC, and Opposites), and Brown Bear, Brown Bear, What do you See? He loves anything with wheels and calls them all "car" as he pushes them along the floor or couch. And of course he still lives for the moments when the cats forget to stay out of reach.

We went last week to his 15 month physical and the pediatrician was pleased with what she saw. He has been having some puking issues - choking when he drinks that leads to puking, or just choking and puking some time after eating - but not every time. The doctor reevaluated his zantac dosage, but he has only gained a pound since February (up to 23lbs 4oz), so there was no major increase indicated. If it does not get better soon, then she said we will stop the zantac and try a new medication. It is a little strange because he has not had trouble with puking since he was 2 months old and in the NICU. Once they got it under control there, we never had another problem with it. It seems better the past few days, so we will have to see what happens!

Charlie also had to get two shots and had to go up to the lab for a blood draw. They are finally testing to see if he is indeed allergic to dairy. It was not fun for him or us, but they were pretty quick about it at least. I was hoping to have the results by now, but have not heard from them yet. I will pass along news when I get it!

Other than that we have been keeping busy and enjoying life!

We went and visited Nana-GG and Poppop a couple weeks ago

and happened across this sign when walking through downtown Saratoga!

Enjoying his Duckling book with cousin Kimmie

Eman was eating a banana with his lunch to I gave a chunk to

Charlie (fully expecting it to be immediately thrown on

the floor!), but he actually took a few bites!!! :-)

Getting two little boys to pose for a nice picture is next to impossible!

At least they look cute as they ignore me and the camera!

time flies when you're...

having fun??

I would not say that we have not been having fun - - we have actually been enjoying life quite a bit these past few weeks! However, Charlie may have his moments of disagreeing with saying its been fun. Three molars have been working their way into Charlie's mouth and its been less than fun for sure!

Our normally great sleeper has been waking up almost every night. He will usually put himself back to sleep, but its still disruptive to his rest and ours. His nose has been perpetually snotty and he HATES when we go any where near his nose to clean it. Our typically happy go lucky little man has had days of crankiness and just not acting like himself. This is so understandable when you see how sore his mouth looks! He handles it better than we would! And we have had to accept that eating is something Charlie will do in his own way and on his own terms. Luckily he is a very healthy size, so we are not overly concerned about his lack of eating having detrimental effects. We have come to the conclusion that force feeding is not worth the frustration it causes us, the tears it causes him, or the other possible long term effects that we may be instilling.

So, he has taken to eating mainly Kix or Cheerios other crunchy options. We did find a way to get at least a little bit of fruit into him by offering him freeze-dried fruit. Gerber makes freeze-dried diced apples and a banana-strawberry mix. We also went to the natural store hoping to find some cheaper options. There was not much of a price difference, but we did find some more variety. He loves the big dried strawberry slices, blueberries, and pineapple chunks. It adds some more options into his crunchy diet!

We have started offering him the sippy cup with water or sometimes diluted juice throughout the day with more regularity. He is slowly, but surely getting better at it. Though we cant help but wonder if the sippy cup aggravates his reflux somehow. He seems to have more trouble with drinking when it is from his sippy cup and has actually puked a few times while using it. We are just continuing to give him time and see what he can do.

Despite his teething and reflux flare ups he still manages to enjoy everyday and continues to impress us! He now imitates words we say to him and seems to understand more and more. After months of engaging him in it, he seems to finally get the hang of peek-a-boo. He will cover up his face and wait for you to say "Where's Charlie?" before uncovering his face with a huge smile. He says "tee tee boo", though not when he uncovers his face. He says "dog" and "duck" but they sound a lot alike. He will point to his belly and feet when you ask him where they are. He will also point to his hair, but prefers to point to yours. He will only point to other people's nose, not his own! He loves to stop whatever he is doing and break out in dance when he hears a tune he likes (such as the sweet and sour Twizzlers or Amazon Kindle commercials)! And whenever he hears applause he gets a huge smile on his face and claps his hands. This includes the applause at the end of each song on the Jack Johnson live CD or from the high school playing fields across the street from our house during lacrosse games. It amazes me that he is SUCH a happy baby! We are very blessed!

So, I guess time does fly when you're having fun. Charlie is such fun no matter if we are all sleep deprived and covered in snot and whatever food he has thrown at us in protest that day (and he does have a very good arm, for the record!)

Cheeks completely stuffed with Kix and very concerned

that we may try to sneak something else into him!

For awhile we could convince him to eat

something more if we let him feed himself!

Success = Mess

Charlie's first slam dunk on our newly installed basketball hoop

Daddy - Charlie bonding time

Our neighbors bought Charlie a water/sand

play table and he absolutely loves it!

sunshine and smiles

The weather has been unseasonably AMAZING for early spring in Syracuse! We have been out playing as often as possible and even made it to the zoo last week. Weather for Easter weekend was the best I can remember in a while and we had a fantastic holiday. We went to brunch with our nephew Emanuel and Vince's parents and then spent a couple hours at the playground. Charlie loved everything about it. He devoured a couple mini blueberry muffins at brunch, making a huge mess all over the table and floor and was so well behaved! He had a great time at the playground running all over and picking up the wood chips. He got to swing a little bit and loved the slide! He is a true daredevil little boy who was not satisfied with being put at the top of the slide before going down - he had to climb back up the slide after going down every time. In all, Charlie has just been as happy and cute as can be lately!!

"Wow... thats one big kitty..."

"Hey are you looking at me??? I am going to throw this thing!"

just super cute!!

The Easter Bunny must love Charlie!

All smiles at Easter brunch!

"More blueberry muffins please!"

swinging with Grandma

first time down the slide - not so sure about it!

"I love the breeze blowing in my hair!"

He looks like such a little boy now!

No more baby!

CDH Awareness Day

We are obviously all about raising awareness every day, but March 31st is a special day in the CDH community for bringing attention to a defect that most have never heard of until they know someone personally impacted. I am so excited about everyone who is wearing turquoise today and spreading the word about CDH! Please continue to share Charlie's story and educate people about CDH - it is the only way we can ever hope to get more answers!

March 31, 2009

Saw this pic hanging in a frame on our wall

last night, and I couldn't help but share it!